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I hate this rate of change

Discussion in 'I have a partner with dementia' started by thebes, Oct 9, 2015.

  1. thebes

    thebes Registered User

    Feb 10, 2014
    163
    London
    I am tired today and developing a cold and expect that's why I am so fed up and sad :(
    One of the many things about AZ that I find hard is the way things keep changing. And now it's all happening quickly again.
    My OH who is 86 and 14 years older than me, had no symptoms until just over 3 years ago.
    the next year I got a bit concerned but still was able to leave him coping fine on his own while I visited family in Australia for 4weeks
    early last year we went to the memory clinic, and got the diagnosis. He was still himself and doing nearly everything
    Since then the rate of change has been frightening. He was refused by a local day centre last summer as too high a need level for them, he became incontinent and much less mobile as his balance became poor. His behaviour was noticeably odd, hard for family to accept, and causing unwanted attention while out. He couldn't any longer be safely left as would just sit and do nothing, not eat drink or move without prompting. Thankfully with a specialist day centre twice a week, and some carer input we got through to this summer.
    But since May it all seems to be accelerating. He had pneumonia in June, caused by swallowing difficulties, and has been weaker ever since, no more day centre as too tired for a day there. He has puréed food but still got another chest infection only a couple of months after he came out of hospital. Last month he became increasingly tired and weaker, and developed erratic breathing at night. We are waiting for an appointment at the sleep clinic though I am told they are unlikely to be able to help.
    This week he has been reluctant to get out of bed each morning, and taken until midday to feel like eating anything, though thankfully he will still drink well. He has alsorefused to go out even for short periods until today. A beautiful sunny day so off to the local garden centre to enjoy soup there and I find he cannot remember how get into the car. He was frightened as he thought he was falling, despite having his walker and my arm to support him. And a couple of times his legs seemed to be on the verge of collapsing under him. He did enjoy it, but was ever so glad to come home and has slept ever since.
    He has had recent blood tests X-rays, urine tests etc and shows no sign of an infection currently. So I guess this is the new normal. I hate this disease and what it is doing to him.
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,767
    Female
    Dundee
    I'm sorry to hear that thebes and can understand why you feel as you do. x
     
  3. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    Sorry you are having such a difficult time Thebes. It is so very sad and you feel helpless to make things better.
    I hope your cold gets better soon, I know if I am unwell I feel overwhelmed and frightened that I won't be able to cope. The only thing I can say is once I start to get better, even though the situation is still so difficult at least I feel more up to managing everything and I can stay in the moment without worrying about the future so much. Big hugs to you.
    xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  4. thebes

    thebes Registered User

    Feb 10, 2014
    163
    London
    Another day on and things are back in perspective

    Your support was much appreciated yesterday, many thanks. Today after a welcome good night my cold is under control and I am back to my preferred mode - determinedly counting my blessings. Such as, my lovely man is still able to be at home with me, he still talks a lot and in that there is the chance of bits of real conversation and sharing. He is very affectionate and able to appreciate all the TLC we surround him with. Our large combined family do what they can to support, and I have a good amount of carer support too.
    I think underlying yesterday's rant was the on- going grief that despite all that, I am losing him. And if anyone else of those well meaning friends comments that of course at 86 he has had a good life and how lucky we have been to find each other in mid- life and enjoy more than 20 years together ... I possibly will tell them straight how insensitive and hurtful they are being. I know all that and am so grateful for itBUT it doesn't make any difference to how I feel about this process of losing him, as I know anyone who reads this will understand. Thank goodness for TP.
    finally to make you smile when we were having lunch at the garden centre yesterday, where anyone with eyes to see noticed there was something wrong with him, I wandered over to the clothes area where there was a sale while he was finishing his tea. I explained what I was up to, and got a big smile and an offer to look after my bag- an old joke about me looking,but not buying- as I moved away he caught my hand and kissed it, as he does. When I came back an observant old lady sitting nearby came ove, smiling sweetly, and I wondered what he had been up to literally while my back was turned for a moment. With tears in her eyes she said ' I have to tell you that was the loveliest thing I have seen for years, him kissing your hand and you looking at him.' Now that was someone who really understands.
     
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,767
    Female
    Dundee
    Oh Thebes what a lovely thing to say. You must have been delighted.

    Bill is 85 and I can totally understand what you mean about people saying 'oh well he's had a good life'. I haven't had it said often to me. I think I'd be tempted to do something I'd regret if it happened a lot.
     
  6. Casbow

    Casbow Registered User

    Sep 3, 2013
    980
    Colchester
    Izzy

    I so understand what you mean. The older we all get the more precious our loved ones become despite their age. What I think people mean is that so many people do not get to live a long life, that those who do are blessed, and even those close should be aware that it is a great privilage to have a loved one live to a good age. I don't think it is meant in a dismissive way.xx
     
  7. truth24

    truth24 Registered User

    Oct 13, 2013
    5,726
    North Somerset
    Brought tears to my eyes, thebes. We went through this too. Best wishes.
     

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